Tuesday, January 6, 2015

Back to basics: are we losing sight of what hospice care is all about?

In our ever-challenging and changing medical system, the current hospice and palliative care movement has undergone heightened scrutiny, increased regulatory stipulations, and in general has become a part of the federal government’s health care crisis (just review Medicare Conditions of Participation and billing requirements to get a head full of terms and guidelines to be overwhelmed by it all). Yes, hospice has become big business.

I am a hospice nurse. I have seen the changes in the past decade, as Medicare requirements become more stringent and hospice has moved from grassroots to mainstream; and the “evidence-based practice” mantra has precluded use of medications and treatments that have historically been effective but now lack current “research validation”. Or new results from a few cooperate-funded studies who have the most to gain by predetermining that certain treatments are not effective change our practice, and I can’t help but wonder about bias. Or large pharmaceutical companies, (providing much of the funding sources for many of the studies on medications), suddenly phase out older medications that are not profitable. Or politics become involved in deciding things like what opioid medications should be approved for public use and how people’s choices at the end of life must be managed by laws and public approval.

And I must pose the question, “Are we losing sight of what hospice care is all about?” I see younger nurses coming into the hospice profession, and learning about “best practice”, being taught that the “experts” know best. That “evidence based practice” is THE answer.

I am reminded of the middle of the last century, when birthing practices became managed and performed by experts in white coats in medical facilities, new technology and expert roles slowly removing the simplicity and normalcy of birth. I am not trying to over-simplify a complex experience, truly: not every birth and death is uncomplicated and many need to have advanced medical care. Thank goodness for advances and treatments that were hitherto unknown! But I am advocating that we not have total reliance on the science of death and dying, remembering how both birth and death have sacredness and mysticism that cannot be quantified. For centuries, birthing and dying are the human experience. Is it really only now, with our medical advancement, that we know how to provide ease of suffering in both states of humanness?

I heard, again, from hospice staff this week, how a family should let the patient be transferred out of the home and placed “where experts in end of life care could care for him”, while the loved ones could just be “the family”, coming to visit and sit at the bedside. And I was a little horrified, that we, the hospice “experts” are succumbing to the lie that caring for the dying is so complicated and combersome, we must rely on “experts” to provide the answers and often even the care. I do not believe we, “the experts”, can provide the same level of solace as a person who has loved a dying family member all their lifetime. I am and always will be an advocate for the patient and family, with the conviction and goal in hospice nursing to create confidence in family members. They can be the ones who comfort and care for their own dying loved one in their own home whenever possible. Isn’t that what most of us hope for, when we die, to be at home with family?

For centuries, caring for the dying relatives was a part of life lessons taught while children grew up in multi-generational living environments, and saw the normalcy of caring for ones’ elders through the lifespan. I like to believe that the basics of care for a dying person can be taught in an atmosphere of simplicity and loving kindness, and the gift that family receive from providing the care is a part of the lasting memorial to that loved one. In fact, this has been my experience time and time again.

I empathize with wanting to standardize and compartmentalize dying, we all would like to have it tidied up and handled for us. It might seem more palatable in the white halls of the medical experts. But I am certain that dying will always involve the messiness and unexpectedness that birthing also entails. Nor does the current body of evidence preclude learning from centuries of how people die.

I am, and will always be, thankful to my dying patients, the only ones actually experienced in dying, who have shown me time and again to STOP, leave my agenda behind, LISTEN to their hopes and desires, and bring perhaps some insight, but not all the “answers” to their bedside. After all, as I have said before, I might be the hospice nurse, but THEY are the experts.

15 comments:

Paul Rousseau
said...

All I can say is Amen. Unfortunately, hospice has become big business, and in the process, has lost its way. That said, there are still many wonderful hospices, but they are solitary lights in an increasing darkness.

I appreciate this reflection..and in many ways caution. This past fall as a family member my most consistent role was trying to intercede when my mother's request to "not be knocked out with so much medicine was met with " our medical team does things this way.." Having been trained by early hospice pioneers in Houston to start with the patient's preferences it was difficult to experience something far different -more like the tryanny of a routine, There are wonderfully respectful clinicians and providers in this field--however reflections like this highlight the challenges of changes to try and "correct".

I also appreciate the message. Before retiring a couple of years ago I had been a nurse in a small community hospital which only had Med/Surg and ICU for 19 years. I worked at developing a proficiency in pain management and end of life care and eventually was certified in both as well as Oncology). It was distressing to me towards the end of my stay the Palliative care team (which I helped form) was moving more and more away from the bedside nurses (who are many times the "experts"). It just seems nurses, physicians, and family are increasingly overlooked. The "Best Practice" issue though is the reason for my comment. Last year there were speakers at the Assembly who told participants, PEG solution was a better stool softener than docusate and should only be used. This was based only on one study but was being called a "Best Practice". It was discussed on the List serve as to how to implement this. I wrote in suggesting it needed more study however I also wanted to share my experience; I take opioids and several other constipating medications. I successfully use senna, docusate, and fiber pills. I add PEG solution until stools start getting too soft and then stop with it because for me it causes nasty cramping so for days it may not be used. Including how all respond differently to these meds as one does to pain medications (and other meds) and someone at end of life may have difficulty with the amount of liquid (and the nasty cramping) I believe PEG solution should remain a tool in the prevention of constipation but not throw the docusate out. One study and 2 experts does not a Best Practice make. I am afraid there was no response but it creates concerns about other "Best Practices" and whether they are appropriate for a particular patient.

As a daughter whose Mom has entered late stage dementia, I am so very grateful to be working with a Hospice nurse who truly understands what hospice care is supposed to be. As a social worker who specialized in end of life care, I "know" a great deal but, all my "knowing" cannot possibly compare to the support I have needed and received from this hospice nurse. Thank you Bonnie!

I'll add my applause to the mix. I recently resigned from our local hospice after 11 years as a social worker working directly with patients and their families, and then as a bereavement counselor. The changes in state and federal regulation have made it so ridiculously challenging to balance the business side of hospice with the care side. In my case, administration was seemingly much more concerned about the business side and every idea was met with a question about cost. They spent so much time trying to find 'efficiencies' in every area that I often found the patients left out of the conversation! The root of hospice is beautiful: end of life care with dignity and respect. I, too, hope the pendulum swings back, but I'm not holding my breath in today's world of regulation.

What a beautiful and moving perspective. Really spot on. Is there room in this world to operate something so worthy and needed as hospice as a business? I hope so. I work in hospice and, while I provide for my family doing so, I am humbled to provide a service for which people are so very grateful. It's a privilege to work in hospice. As someone whose family has been impacted by hospice (twice), I will never lose sight of what hospice care is really all about. Ever. Thank you, Amy, for what you do and for a thoughtful article. The hospice world is lucky to have you!

Amy, you are so right. I am seeing an enormous push in the last year alone for hospice to acquiesce to the government "expert" regulations which in the next 5 years will place most of our hospice patients in nursing homes. RCFE's, ALF's where so many seniors have gravitated for there end of life care, are now finding regulations that transport them against their will into skilled nursing homes or emergency rooms. Liquid opiates can no longer be used, haldol cannot be used, side rails are forbidden, limitations are placed on ativan (2mg/24hr), PCA pain pumps forbidden, suppositories not allowed. All these medication restrictions place a heavy burden on the already understaffed hospices who do not have the staff to provide continuous care. Consequently patients are forced to go into skilled nursing homes with ratios of 1SN/15 patients, or 1CNA/15 patients. The legal Patient Rights code is being violated. It will be interesting to see how the baby boomers handle this because the seniors aged 90-100 never imaged they would be forced into nursing homes at end of their lifes.

Amy, this is so well said. Dying is not a medical event. Hospice originated outside of the medical model to meet the needs not being met by the medical system. Over the years (basically following the implementation of the Medicare Hospice benefit) the hospice philosophy has morphed into a medical and big business model. We are losing our focus, our way, the strength and direction of our purpose.

The worst thing for hospice IS that it has become a for profit big business. More emphasis on documentation meeting LCD guidelines. Discharging patients who are alive past the mythical 'six months' because of the fear of RAC audits. In reality, hospices should be rewarded for keeping these patient in dignified conditions in their homes rather that trip after trip to the ER or inpatient ineffective medical care. Im a ER doc who found a second career in hospice. In the IDT meetings, i cringe when a patient who has been in hospice for six months is not showing decline. I hope it changes.

This article was so good to read. I am a. RN within the aged care hospice system. Where I understand the rules, regulations, system checks, government checks and evaluations are all there for a reason, the journey towards the end of our lives should very much include informal and family participation. Aged care facilities, nursing homes etc., are what they are, they provide a homely environment with warmth, understanding incorporated with daily care. These are not ED, high dependency units etc. who remembers breakfast, showers and then weather permitting, a group of us would take a group of residents down the street to the sea. We all enjoyed this outing and returned in time for lunch. The liability, the risks, the time constraints have put an end to some of these much valued times.

Well said. I am tired of State Regulators coming into nursing homes and banning medications that have been used for years and are very effective for palliation. I am also angry over the assisted living facilities that make a business of advertising care for the elderly and then when they are dying do not allow morphine or haldol or lorazapam in liquid form. The public needs to be prepared to arrange for care at home when they are dying so that the government and the corporations stay out of prohibiting best practices.

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